CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • 2 Weeks Off Of Prednisone As Of Today

    Today marks 2 weeks of being off of prednisone…finally! It has been an adjustment for my body after being on different strengths of steroids for 5 weeks. It kinda feels like my body said, “WTF!! Why did you take the steroids away!?” Haha.

    I did lung functions on my home spirometer to see where I am with no steroids in my system for 2 weeks. They are down to 29% which is no surprise to me. The 36% I got at my last appointment on the 8th, was a “fake” number with it being so close to the day I stopped prednisone. Steroids help open my lungs and airways up. Having the steroids in my system can give, and does give, skewed numbers on my lung functions.

    With as big as a hit as my lungs took with the parainfluenza and all the asthma crap that the parainfluenza caused, I was pretty sure my new baseline (my “normal” lung function) was going to be closer to 27-30% now. So this is no surprise to me.

    CF is slow progressing disease, so it’s a given that my lung function will decline over time. Of course I would love for that not to be the case but this is life with CF. I can’t change what CF does so I just roll with the punches and make the best of it.

    I updated my transplant coordinator on how I’m doing since all the craziness happened. She said they are still good with seeing me in September, which is already scheduled. As usual, if I need to be seen before that I can always let them know.

    NO, I’m NOT listed for lung transplant. I’m not at the point of needing to be listed yet. With where I’m at, in regard to my lung functions, if I drop lower and have more limitations in every day life and have fewer treatment options, we will entertain more serious talks about transplant.

    Please remember just because I’m followed by my transplant hospital/clinic, this DOES NOT mean that I’m listed or ready for transplant. This is simply so that they can keep eyes on me for themselves. This way I can keep all my testing up to date if I were to have a rapid decline and need to be listed quickly as well.

    I wish transplant was a simple process but it’s not. This makes it hard to explain to non CF people and/or anyone who doesn’t understand the lung transplant process. Yes, it would be easier to just say, “yep, I think it’s time, sign me up!” That’s just not even close to how it goes. Haha. My body is the one who is in control, so I just listen to it.

    That’s all I’ve got for an update. I hope y’all have a great week!

    Until next time…

  • CF Clinic Hospital Follow Up

    Hey y’all! I had CF clinic this morning for a check up after my hospital stay that was from March 31st to April 8th. It was a great appointment, if I do say so myself.

    My lung functions were really good. My FEV1 was 36%/0.89L! I haven’t seen 36% or over since early 2022. These numbers are because I’ve been on prednisone for the last 5.5 weeks. We are hoping I can hold onto these good numbers.

    If you are curious on what my steroid taper looked like for the last 5.5 weeks, here goes…I started at 60mg twice a day of IV solumedrol on day 1 in the ER. I continued 60mg twice a day for 6 days. I then moved to 60mg once a day for 2 days. I then switched to 50mg of oral prednisone once a day when I went home and continued that for 5 days. The taper then went down to 40mg for 5 days. I then went down to 30mg for 5 days. When I went down to 20mg, I didn’t tolerate it well. My lungs got very tight after 2 days on 20mg. I asked to go back up to 30mg or 40mg. My clinic PA ok’d me going back up to 30mg for 7 days. I was then able to move down to 20mg for 7 days. I was then finally able to go down to 10mg on Tuesday of this week. My last day of 10mg will be on Monday!! It’s been a long 5.5 weeks on steroids. I’ll be very happy to be done with steroids.

    CF clinic was short and sweet, just the way I like it! I saw one of the clinic nurse practitioners today. My blood pressure was slightly elevated today. It’s not too surprising after walking into the exam room from the waiting room. Walking rises the BP. To answer the most common question I get about my high BP…NO, I do NOT have “white coat syndrome.” If you don’t know what “white coat syndrome” is, that is when you get nervous/anxious when you go to the doctors. I have never gotten anxious about seeing the doctor. I do NOT have medical anxiety at all. I never have in all my 45 years had “white coat syndrome.” So the high BP is strictly medicine related and from my really crappy asshole lungs.

    My primary doctor upped one of my blood pressure meds when I saw her last, on April 17th, until I’m done with steroids. The steroids are not helping my high blood pressure at all. My primary doctor had me start taking the HCTZ (hydrochlorothiazide) 12.5 mg in the evening as well as in the morning to help keep my blood pressure low enough for her liking. The last 2 days my blood pressure at home has been REALLY good! I have an electric BP machine. It always reads my BP higher than it really is. Thankfully my husband was a trauma medic when he was in the Air Force, therefore he still has his BP cuff and his expensive stethoscope. This means my husband checks my BP for me at home for me so I can get a real reading. I will go back to taking the HCTZ 12.5mg only in the morning when I finish taking the prednisone next Monday.

    I hadn’t shared this next little tidbit of info because it can be/could be embarrassing to share but honestly when have I been embarrassed when it comes to my health stuff. haha. I’m an open book for a reason and the reason is to educate people. I’m not stopping with the education now.

    The main reason for the appointment with my primary doctor on April 17th was for her to look at the “lesions/bumps” on my tongue. Well…turns out that I had a herpes flare in my mouth/on my tongue. I have never had a herpes flare IN my mouth. I have only had really bad cold sores which is the herpes virus showing up and being a butthead. When your immune system is knocked down from being on antibiotics and steroids, it gives the herpes virus free rein to show up pretty much anywhere it wants to. If the herpes virus lives in your body, it’s there indefinitely therefore it rears its ugly head when it feels like it. haha.

    The treatment is Valtrex (which is an anti-viral). She prescribed a 10 day course, with me taking it 3 times a day. Thankfully after about 4-5 days I started to see tiny improvements. The lesions were basically gone after maybe a week, I can’t remember. I’m now finally able to eat good flavorful food again. I was serving basically on plain mashed potatoes, mac and cheese, string cheese, scrambled eggs and other soft pretty bland food. Cold things like popsicles hurt so much to eat. Really hot food hurt as well. It was a lot of trial and error when trying different foods. I had to keep my drink full because I had to continue to take drinks after every bite to help “push” the food down. My tummy is very happy to be able to eat my husband’s delicious cooking again.

    I did mention in a previous blog post that I had lost some weight (about 10 pounds) since being in the hospital. Being limited on what I could eat for about 2-3 weeks did NOT help the weight loss situation. With that said, my BMI is still in good range. I am basically back to my pre Trikafta weight and I’m not mad at that!

    That sums up today’s appointment. I will go back to see them in 3 months for a normal check up. The NP said she didn’t even want to come into my room with the numbers I blew. She didn’t want to jinx anything. I didn’t really NEED anything except having her listen to my lungs, which sounded decent, and making sure I didn’t need any refills or any other random things. Here’s to making it to my 3 month check up without needing to be seen before that appointment. haha

    Until next time…